A “cure” for Down syndrome? — Reader feedback #4

Previous posts questioning the efforts to “cure” Down syndrome begin here and here.

Silas Barss Donham, husband of Jenn Power, father of Josh and Jacob, and son of Contrarian, writes:

A person’s view of this type of medical research depends on whether one sees Down syndrome as a disease or as a natural genetic variation, like left-handedness or hair colour. Most people in our society fall into the first group, but then, most people in our society don’t know much about people with intellectual disabilities. I suspect most people in our society wouldn’t imagine the second group exists.

This is related to one’s ability to appreciate the unique gifts people with Down syndrome offer to those around them. We do not see them, nor do they see themselves, as people who suffer from a debilitating disease, or as incomplete attempts at humanness. We see them as complete human beings who have a unique experience and viewpoint. Trying to “cure” this condition seems as foreign as trying to cure maleness, left-handedness, or homosexuality.

Full post after the jump.

A person’s view of this type of medical research depends on whether one sees Down syndrome as a disease or as a natural genetic variation, like left-handedness or hair colour. Most people in our society fall into the first group, but then, most people in our society don’t know much about people with intellectual disabilities. I suspect most people in our society wouldn’t imagine the second group exists. It is my experience that most people who have Down syndrome, and most people who have a close personal relationship with someone who has Down’s, fall into the second camp.

This is related to one’s ability to appreciate the unique gifts people with Down syndrome offer to those around them. We do not see them, nor do they see themselves, as people who suffer from a debilitating disease, or as incomplete attempts at humanness. We see them as complete human beings who have a unique experience and viewpoint. Trying to “cure” this condition seems as foreign as trying to cure maleness, left-handedness, or homosexuality.

Contrarianasks why, if we would fix a cardiac problem which is related to Down Syndrome, we wouldn’t we do the same for a cognitive impairment. A cardiac problem can be fixed without much effect on the patient’s personality, but a cognitive impairment is quite a different thing. Try putting the question of Down syndrome aside. Imagine your son or daughter has just been born, and an enthusiastic and brilliant doctor proposes a radical new treatment that will enhance your baby’s cognitive abilities. “All we have to do,” she says, “is regularly inject this chemical into your child’s brain. It will radically alter his/her ability to think and learn. We can’t predict what else it will do, as we’ve never tried it on a human subject before.”

To agree to such a radical and risky treatment a parent would have to see his/her child as someone profoundly defective, that the probable course of that child’s life would be one dominated by unbearable suffering, without redeeming value. That is simply not the reality of Down syndrome.

People with Down syndrome are important and healthy members of society. My life is filled with stories of people whose lives have been altered by their relationships with people who are weak and dependent, and who, partly by virtue of that weakness, have something unique to offer those around them. In a world where no-one is weak, how can we learn co-operation, humility, and compassion? These values are hard to quantify, and therefore they are hard to stack up against the very concrete “deficits” attached to disability.

Our society tends to place an exaggerated value on independence, and to do a poor job of including people who are different. A society that over-values youth, strength, and beauty has something to learn from people who are weak. If there is a suffering that flows from having Down Syndrome or a similar disability, it has to do with inadequate support, lack of inclusion, or the devaluation of people who are physically or intellectually dependent on others. Research like this does nothing to alleviate these problems.

One of the folk expressions I learned at Contrarian‘s knee is: “If all you have is a hammer, everything looks like a nail.” I would paraphrase it as, “If what you have is medical training, everything looks like a disease.” This whole debate about a “cure” for Down syndrome is analogous to the much more widespread question of pre-natal testing and abortion. In most developed nations, the abortion rate for fetuses with Down syndrome is around 90%. Since people with congenital disabilities are not generally born to like parents (In terms of marginalized groups and politics within the family, people with disabilities have a lot in common here with people who are homosexual.), parents in this situation are extremely dependent on their doctor’s advice. But there is nothing in the doctor’s medical training that puts them in contact with a non-disease-oriented understanding of disability. This dramatic eugenic shift is taking place in our society right now, and neither people with Down syndrome, nor the people close to them have any voice in it.

One final point I would like to make is this. When we get into a debate about the eugenics of prenatal testing, or a “cure” for intellectual disability, the rebuttal arguments (as I’ve demonstrated) usually focus on what people with disabilities have to offer our society. “Don’t change them! Don’t get rid of them!” we trumpet. “We need them!” I would just like to point out that there is no other group in our society that needs to demonstrate their worth to other people in order to secure their right to exist unmolested. If life with Down Syndrome was really filled with intrinsic, unbearable suffering, people with Down Syndrome would be dropping from our skyscrapers and bridges like flies. If you really want to know the worth of a life lived with Down Syndrome, ask someone who has it.

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